Wednesday, May 16, 2012

Don't call it a comeback...

. . .well, at least, not yet. Lets see if I stick with it. Lately I have been toying with the idea of blowing the dust of this old blog and writing again. It has been almost 3 years! Three years! Yeah, sorry about that. But sometimes blogging about your life can be challenging (about that in another post).

I did, however, promise I would always update with my health. So here it is. I'm good. I am great. Life is great.

I have an upcoming trip to Mayo Clinic planned for the end of June. Two fun filled days of being poked, prodded, scoped and more. Yahoo. Honestly, I am nervous as all get out for this appointment. I haven't had an upper scope in 3 years! (In my defense that was at the recommendation of the GI at Mayo, but going that long between scopes is a bit unheard in the FAP community). But 3 years! So much could have grown or changed in 3 years. I am doing my best not to dwell. It is what it is, and I cannot change it at this point.

While at Mayo this time I will be going for the 3 for 1 deal. While I am under for the upper scope, they will also do the lower end. I will also be getting a thyroid ultrasound done while I am there. (The latest research out of Cleveland Clinic is showing the incidence of thyroid cancer in FAP patients is much greater then previously thought). I figure more bang for your buck this way. Well, not really. We will still be spending what most people will spend on a nice, FUN vacation somewhere else.

I do have a handful of other post in the works, that is if anyone out there in is still interested in reading them. I promise to (try) not whine (too much) and to show how life with FAP is not a death sentence and that living without a colon isn't all that bad.

15 comments:

Oh, Steph, I'm so glad you're back! I discovered your blog at the same time I was diagnosed with FAP. I felt fortunate to be able to read a firsthand account of how things went for you. It's been a year since my J-pouch was "activated" and I'm doing great, too. Welcome back!

Hello, I'm 29 and also just got diagnosed with FAP or a variant. Thanks for writing your blog! Stumbled on it late one night, and it definitely put me at ease. I live in Hawaii, and there's not a lot of doctors that specialize in FAP-related colectomies, so I was wondering if you have any advice on where to go for mine since I am going to have to fly to the mainland. Thanks again!

KC, I am so sorry that you are having to deal with FAP. As for traveling for your surgery, Mayo Clinic and Cleveland Clinic are "known" as 2 of the best. However, many hospitals can perform the surgery. Are you on Facebook? There are a couple support groups on there, and I am sure someone could recommend a place closer to you. Try doing a search on there for "F.A.P." and "familial adenomatous polyposis" and "living with FAP". Good luck.

Thanks! I checked out the facebook groups and they were great - Mayo seems pretty awesome though because they take my insurance and wanted to set up an appointment immediately, rather than the other centers that want me to fly out for a consultation and then fly out again later. Thanks for your help!

I'm 45 and have recently been diagnosed with Attenuated FAP. I am just now going for the genetic tests, but it looks like I am the first in my family to get it.

I have recently made the decision to have 2/3 of my colon removed. It has been a very scary decision to make. I think mostly because of the unknown. What will my life be like in the future, etc.

I also have 2 children. I have to say that the thought of possibly passing on the gene to them has weighed very heavily on my heart. Good news is that neither myself or my teenage daughter have the Churpie/Freckle in our eyes (as per recent eye exam). That gives me hope.

I am so happy that I found your blog. I have been reading it over the past 3 days. I have been wondering what to expect and your journey and writings have helped me a lot. Especially the little stories of how you need to stay vocal with the health care professionals when it comes to your own bodies signals.

I have been seeking an alternative for a few months, but 3 separate specialists have all told me that to avoid cancer (no cancer currently) and chemo (I don't want to make that decision) the colon must come out.

I had no symptoms. I only went in for a colonoscopy because my older half-sister was found to have colon cancer when she went in for a routine screening. They removed a foot of colon and she had 6 months of chemo. I thought I better get it checked out too. The doctor didn't expect to find anything. Well she found 50-100 polyps. She removed about 30 tiny polyps on the way IN and then gave up and just finished the scope. She found 1 large flat polyp near the cecum.

Life has been a whirlwind of research, writing and talking with specialists, all while trying to save the colon. The doctors keep asking "Why do you want to save your colon so much?" I don't know....maybe because it is a big part of me. I eat mostly vegan/nutritarian and I need to be able to eat veggies, fruit, nuts, and beans. I don't eat meat, dairy, or processed foods (except for Starbuck Soy Chai Latte - LOL).

Your story has given me hope. The doctors say that there is only a 10% chance I will end up with a temporary bag. So I should wake up with my colon all put back together. We think we can manage monitoring the rectum and small portion of the colon with yearly screenings.

I also had the scope down the throat. No polyps near the duodenum, but some small ones in the stomach. The doctor is not worried about those ones.

I just stumbled across your blog and I am glad I did!! I am a 26 year old female diagnosed this year, first known case in the family as well. Reading your blog has really given me a lot of hope! It's great to know that life with a j-pouch and without a colon can be "normal"- and that my husband won't have a "defective" wife forever. Haha. I hope you keep blogging- you help me , and others like us!

Hi Steph , i came across your blog so i decided to read it maybe get some inside knowledge of what ppl with f.a.p have to go through. I was diagnosed with f.a.p in december of 2008, by the way i am 48 now , yeah i was late being diagnosed. i didnt even know about it,it was only cos my mother had a blood test done and thats how it was found. Most of my family have this although some have afap.I will be having my operation to remove large bowel but retain the small bowel in January 2013, so just under 2 weeks time. I really do not know what to expect with this operation , during and after, i am not happy but i know it has to be done. Within the last week i was told by my gp that i was anaemic, says this is most likely due to the polyps i have bleeding ( 100 + ) well that prollly has increased quite considerably as it is now coming upto 2 years since i had a colonoscopy done. I am wondering after this operation if i will still beable to eat properly or will i have to watch what i eat . Did you find this a problem at first? Would love to hear from you on this.

Hi there. I just read your blog from start to finish after finding out myd daughter has been diagnosed with Gardner's Syndrome/FAP. Will you please give another update as to how you're doing? Reading your blog has been a cathartic experience. Thank you for sharing your story!

I am a researcher at the University of Edinburgh, and I am currently looking at people's experiences of living with hereditary cancer syndrome, and how they talk about this through online blogs.

Your blog describes these experiences in a way that will give support to others, and I have enjoyed reading your posts, which have also taught me about FAP. I wonder if you would give me permission to use your blog in my research? I can tell you more about this just get in touch if you'd like (Emily.ross@ed.ac.uk).

About me

My name is Steph. At the age of 29 I was diagnosed with Familial Adenomatous Polyposis (FAP). This blog is my journey through life with this disease.
I hope to use this blog to provide a way for friends and family to know what I am going through both mentally and physically. I also hope to provide a place for others w/ this disease to see that they are not alone.